My Tarlov Cyst Disease Journey: One Year Post-Op

Рет қаралды 2,631

Жыл бұрын

#tarlovcyst #tarlovcystdisease #raredisease #raredisease
I have officially made it - I am one year out from having surgery to help correct my Tarlov Cyst Disease.
Please consider watching the other videos in this playlist for more details on my whole journey as this video is to just provide an update on how life is today for me!
Thank you to each and every one of you who have watched these videos, messaged me, commented, asked questions, and showed your support in any other ways....THANK YOU! I hope these videos have validated your pain, educated you on the process and made you feel like you had an advocate in your corner! ❤️
To learn more about our Tarlov Cyst Disease Awareness Day initiative, please visit tarlovday.com.

Пікірлер: 16

@Mare_art Жыл бұрын

The * hey you’re getting old * routine from doctors is infuriating. To me that’s ignorance on their part and they’re afraid to admit they don’t know anything about this. Thank you so much for sharing your experiences.

@PortugalLawyer Жыл бұрын

thank you for your testimony and inspiration!

@meetthemaskeys4139 Жыл бұрын

Thank you for watching!

@monav1423 Жыл бұрын

I’m so glad you did this video and you look great and sound so happy. I think I needed to hear your progress and your positive attitude has probably helped your healing. Im getting my appointment with Dr Feigenbaum set up and I was very apprehensive about going through with it. The thought of having this extensive surgery has been concerning because I’m slow at healing but my symptoms are getting worse than ever. Do you have any advice on how to prepare your body nutritionally or with supplements to help with the healing process? Just curious. Thank you for being such a blessing and encouragement to us suffering with this .

@meetthemaskeys4139 Жыл бұрын

Aww, I'm so glad you found my videos to be helpful. A positive mindset is definitely an important key piece to a good recovery. This disease is definitely mental and emotional as much as it is physical. Regarding nutrition, I did work with an integrative doctor. I was taking my normal daily vitamins, but I definitely think you would benefit from talking with a professional about an anti-inflammatory diet or something that will just help your body really heal afterwards. I hope that helps!

@monav1423 Жыл бұрын

@@meetthemaskeys4139 That’s a great idea! I certainly will look into a anti inflammatory diet. 😊

@Mare_art Жыл бұрын

That’s such an important question! Sugar is a real bad culprit for causing inflammation. People don’t realize just how harmful sugar is. And inflammation is at the route of pain. Sugar = bad bad bad.. Also, Artificial sweeteners are NOT better. There are other health risks with those. Best of luck! Please check back and let us know how you’re doing.

@wayneyoung4911 11 ай бұрын

I am so sorry to bother you again. I am so nervous about my surgery. I wonder if you know anyone in your group has returned to normal completely after surgery. Are you aware of the percentage people got successful recovery and have a normal life. Thank you Pearl

@meetthemaskeys4139 11 ай бұрын

Hello! No bother at all. I honestly do not know lf the percentage but I'm pretty much back to doing all of the things I love. I may have to modify some things, but I'm feeling great these days!

@slingshotmcoy 4 ай бұрын

I recently met with a potential client that wants to train with me that has a Tarlov Cyst. I'v been trying to research it some, but i'v been looking for anecdotal experiences. Can I ask how the Cyst effected your movement and exercise before surgery?

@junlu5758 Жыл бұрын

Hello, have you ever had an MRI after the surgery to see any changes in the cyst?

@meetthemaskeys4139 Жыл бұрын

Yes, after surgery you are required to do a 3-month MRI and send it into the doctor to review. Everything looked as if should in my case - no cysts and the wrapped nerves were looking as they should!

@rajivsang78 6 ай бұрын

I am suffering from perineural tarlov cyst to one year. so please tell me ..

@gwyn5509 Жыл бұрын

Hi there! Thank you for your videos. I have an appointment with Dr. Feigenbaum March 25th. This has been over 2 years of going around and around with specialists. If you have an instagram or fb account would you be open to a DM so we could connect and have a conversation?

@gwyn5509 Жыл бұрын

May 25th…. not March

@meetthemaskeys4139 Жыл бұрын

I do have an Instagram account just under my name. It's a public account so feel free to message me there. I'm happy to connect. May 25 will be here before you know it!